Understanding Tuberculosis: Perspectives and Experiences of the People of Sabah, East Malaysia

Article excerpt

INTRODUCTION

Tuberculosis (TB), a disease of ancient time as revealed by DNA analysis of tissue samples from mummified bodies and skeletal remains of more than 5,000 years (1), is still a public-health problem. It is one of the most important yet neglected international health priorities (2). In 2007, it was responsible for an estimated 1.32 million deaths among HIV-negative people and an additional 456,000 deaths among HIV-positive people (3). Based on surveillance and survey data, the World Health Organization (WHO) estimated that 9.27 million new cases of TB occurred in 2007, a rise of 30,000 from the previous year (3). The sufferings of TB patients, in terms of physical and economic consideration, have been reported, including rejection as a result of the stigma associated with TB (4-10).

TB is endemic in Malaysia with a notification rate among smear-positive patients of 36 per 100,000 in 2007 (11). Sabah contributes one-third of the total cases in the country and has a notification rate for all cases of 100-200 per 100,000 people for almost a decade now (12). Sabah, one of the 13 states in Malaysia, is located in the Borneo Island. The major ethnic groups are: Kadazandusuns, Muruts, Bajaus, and Rungus. Although the majority profess to either Islam or Christianity, some still hold on to ancient beliefs and practices.

TB is a social disease, and healthcare-seeking behaviour among patients is influenced by gender, age, socioeconomic and social status of female, type of illness, access to services, and perceived quality of the service (13), which often interact in a complex web. People can be confused as to the implicationss of TB symptoms, costs of transportation, the social stigma, the high cost of medication, and perceptions of patients about clinic facilities as unfriendly, and all these contribute to the complexity of the disease (4). To tackle the huge problem of TB in Sabah, it is important to address all these issues. Very little is known about healthcare-seeking behaviour of the people in Sabah with regard to TB. The specific objectives of the study were to assess the knowledge and perceptions of TB patients and the community about TB and the experiences of healthcare services and to examine the impact of TB on patients and their families. The findings presented here are based on a qualitative study, which explored healthcare-seeking behaviour with regard to TB among the people of Sabah and the impact of TB on patients and their families.

MATERIALS AND METHODS

Study population

Thirty-two indigenous groups comprise the people of Sabah, with over 80 locally-spoken dialects with a wide variation in traditions and cultures. This study was conducted in seven districts: Kota Kinabalu, Penampang, Putatan, Tuaran, Kota Marudu, Kudat, and Keningau. Kota Kinabalu is the state capital with a mixture of all ethnic groups. Penampang is a predominantly Kadazan area where one-third of the population belong to this ethnic group while the neighbouring district of Putatan is a predominantly Malay area (57%) (14). Around 45% of the people in Tuaran are Dusuns, followed by Bajaus (29%). Similarly, around half of the people in Kota Marudu are Dusuns. In contrast, two-thirds of the population of Kudat are Rungus while in the interior district of Keningau, two-thirds are of the Kadazan-Dusun-Murut ethnic groups (14).

The author developed a conceptual framework to facilitate the exploration of healthcare-seeking behaviour among the respondents. In this framework (Fig.), the author has combined the elements from the Health Belief Model (15), Health Care Utilization Model (16), the four 'As' (Fig.) and the pathway model (17). The perceptions of patients on severity and benefits to therapy-choices help conceptualize healthcare-seeking behaviour. These perceptions are influenced by other factors, such as psychological, socioeconomic, and gender. The roles of 'significant others' and need and enabling factors also provide cues for taking action for treatment. …